I just cast my vote as "remission". I would say that I am just squeaking in at the 80% recovered. I'm not finished.
@trollo You brought this to this thread.
"Then when I got a bit comfortable with the adb12 titration, I added Acetyl L Carnitine to the protocol(ALCAR). ALCAR totally blew me out, and this was just a few days back. ALCAR has made my symptoms increase tenfold as compared to the mb12 startup response.I almost felt psychotic the first time I took ALCAR. I had to and am still titrating it very carefully."
I want to say that one of my biggest surprises has been the difference in my response to l-carnitine fumerate as opposed to l-acetylcarnitine. Before I even came here, I always believed that carnitine was going to be part of my answer, but ALCAR made me sick 4 times over the prior 3 years...very sick, with a lot of psych symptoms. LCF has been an important part of my recovery and I will start a light exercise program this week.
I never thought that I would ever be able to exercise again. I even got out to the workshop today. brad

@Brad I also recently voted 80% remission, after 9 months on Freddd's Protocol. I didn't have negative experiences on AlCar, but it did nothing. LCF completed the Deadlock Qtet and led me to feeling good for the first time in a decade. Now slowly increasing Mfolate and B12, currently AdB12, to see if further healing possible. Congrats to you. ahmo

Carnitine was probably the most massive surprise I had in all of this in many ways. The clipping below, and I would suggest reading the whole thing just for background, clearly has some flaws in understanding based on our own experiences here. However, it brings up some of the important factors. When I went looking for what could be wrong with me I examined all the assumptions. It is ASSUMED we can make enough carnitine of whatever form we need, if we have enough methionine and lysine. There is that pesky methionine again. Without enough methionine, too much tied up as homocysteine might leave too little for carnitine. Carnitine fumarate, the kind specifically used in the mitochondria appears to be a synthesis problem for perhaps 80-90% of us here. ALCAR is the type that is supposed to be able to benefit neurology better.

As to amounts, what we are finding here is that people who are deficient are very sensitive to carnitine (tons of energy on doses < 100mg) and that for some people with a certain set of symptoms and neuropsych symptoms, they have a hyper response of extreme neuropsyc symptoms to less than 1mg.

Carnitine is known to be essential for forming osteoblasts for the formation of bone and keeping it strong. MeCbl appears also to help strengthen bone. Carnitine and AdoCbl are needed specifically, in addition to all the other nutrients, in my experience and observation of others, for the stimulation of mitochondria formation and muscle formation.

If @trollo had read my postings and cautions about carnitine, whichever form works best for a person, the need for a microtitration or at least a very cautious one is repeated over and over, about the extreme neuropsyc symptoms certain people have. This has been posted over and over for the past several years. On the levels of healing, on the symptoms associated with carnitine and healing, the carnitine caution is very large and red.

Whether carnitine is an essential nutrient or not has been on the debate table for some time. In the

early investigations of this nutrient, it was assumed that an individual could synthesize adequate

amounts, ingest sufficient amounts through the diet, or meet needs by a combination of both.

However, more current research shows that this is not the case for some individuals, and

supplementation is necessary to maintain normal energy metabolism, thus making this nutrient

essential.33 Carnitine has also been called conditionally essential, which means that in certain

situations the need for carnitine exceeds production by the body and it must be taken in through the

diet or a supplement. This may be particularly relevant in times of stress, higher energy needs (as in

pregnancy and breastfeeding), or with a restricted, meatless diet. This is bad news for vegetarians, who

take in almost no carnitine and are often deficient in lysine as well, which is a critical nutrient for

carnitine synthesis in the body.2,34Which Form to Take?

Choose the L form of carnitine over the D, since it is the biologically active form found in foods and
synthesized in the body.35 The tartrate form is considered stable and pure.2 Another more recently

produced form is fumarate, which is a component in the Krebs cycle, a key energy-producing process.

Because of fumarate's role in this cycle, the fumarate form may be better utilized by the cells that are

struggling for oxygen, such as with energy production or heart function.36 When choosing L-carnitine

or ALC, keep in mind that L-carnitine is useful to support energy production, weight loss, and heart

muscle function, whereas ALC is the preferred form to support brain and nerve function.2,38 Thus, if

you want to achieve both benefits, take both.

How Much?

There is substantial evidence that for optimal health, we should be getting at least 250 to 500 mg of

carnitine in our daily diet.2 However, studies indicate that the average diet only contains between 5 to
100 mg.1 It is interesting to note, humans have been eating carnitine in significant amounts for most of
history. It has been suggested that during pre-modern times, people ate at least 500 mg and up to 2,000

mg of carnitine per day.2 Since red meat is not necessarily a staple in most diets these days, it is
starting to appear that supplemental carnitine is a viable and wise choice for many people.
L-carnitine is extremely safe. No significant side effects have been reported and overdose or toxicity
levels are unknown. The daily dosage of L-carnitine in all of its forms is typically between 1,500 and

4,000 mg in divided doses,37,38 although Crayhon recommends a lower dose of ALC at 250 to 1,000
mg.2 Consider beginning with 500 mg of L-carnitine per day and/or 250 mg per day of ALC for a few
days and increase the total amount by the same dosage every few weeks until desired results are
achieved. Given the safety of carnitine, it appears to be better to err on the side of taking too much

rather than too little (except in patients undergoing hemodialysis).38

It is the same protocol but that was only a snapshot in time. No one is taking B Right anymore because it contains folic acid, for instance. I did not follow the pack on the choice of a replacement so I cannot say what they settled on. I believe a number of the supplements have changed, the one for aB12 also. Maybe Idie or Mogy would know.

Click to expand...

I posted something on this recently with no replies.
It appears the B right formula has changed and the folic acid is now some new type of methylfolate.

I posted something on this recently with no replies.
It appears the B right formula has changed and the folic acid is now some new type of methylfolate.

Click to expand...

Last time I read the label it was a mix of 400mcg of folic acid and 50mcg of a different brand of methylfolate. As 400mcg of folic aciod appears able to block 4000mcg of methylfolate it is no deal. Too bad, I thought it was other wise great.

uote="Freddd, post: 414645, member: 20"]Last time I read the label it was a mix of 400mcg of folic acid and 50mcg of a different brand of methylfolate. As 400mcg of folic aciod appears able to block 4000mcg of methylfolate it is no deal. Too bad, I thought it was other wise great.[/quote]
If you haven't checked it lately can I ask u to check the b right on iherb. I know the label is different but ingredients also look different to me. If your certain I will take your word. U would think it would be in their interest to change the formula.

quote="Freddd, post: 414645, member: 20"]Last time I read the label it was a mix of 400mcg of folic acid and 50mcg of a different brand of methylfolate. As 400mcg of folic aciod appears able to block 4000mcg of methylfolate it is no deal. Too bad, I thought it was other wise great.
If you haven't checked it lately can I ask u to check the b right on iherb. I know the label is different but ingredients also look different to me. If your certain I will take your word. U would think it would be in their interest to change the formula.

I had another look on the Iherb site. It doesnt say folic acid but says methyl folate (6s)-5- methyltetrahydrofolic acid and is the most biologically active form of folic acid. I googled the methyl folate etc etc that is mentioned above and it says its different to folic acid????

The problems is the label says folic acid and QUATREFOLIC.. There are both in there. As folic acid can block ten times as much l-methylfolate in my experience and others, and folic acid is listed first and so is the majority of folate, I would suggest that the only way somebody will know is their own trial comparing B-Right to something without any folic acid. I thought b-right was great except for that pesky paradoxical folate insufficiency. If a person has run sufficient A-B trials with and without folic acid to know for sure how it affects them, do what works for you. If a person can't get rid of paradoxical folate insufficiency symptoms while taking B-Right or any other b-complex or other combination with folic acid in it, and that stacked on top of food source folic acid, then a person needs to stay away from folic acid. That is much tougher now.

I was told by my dentist that the b12 and other ingredients can enter through the tubules lower on the teeth than the enamel and cause pain. Sensadyne toothpaste and other such can prevent those effects. Eroding enamel is painless until a deep cavity is formed. Also, the nerves can become hypersensitive in the neurological startup. Lack of methylfolate can also cause hypersensitive nerves. Pain to hot and cold is very common in these deficiencies. Exaggerated pain can occur with the deficiencies and made worse as the nerves wake up with the supplements.

Is there any one else that get wounds or bumps (for me its more like wounds) under the tongue where we place the sublingual mb12?

Click to expand...

For me and others that is often a "quick" symptom of paradoxical folate deficiency. It is part of that epithelial layer, same as acne on the scalp, face and elsewhere. Canker sores are in the same class. "Beef-red burning tongue" is almost always a slow b12 deficiency symptoms rather than a quick folate symptom.

Sounds like things are going right along. The fact that AdoCbl made ANY DIFFERENCE AT ALL of the type you mention is because it and the carnitine are WORKING in the mitochondria to produce ATP on which most reactions in the body are dependent. L-carnitine can be micro titrated easily which will control the "acceleration". The unpleasantness appears to be caused by damaged neuron startup making them very irritable. If you were not deficient of AdoCbl and carnitine, they would really have no effect as there would be nothing more for them to do. AdoCbl goes and sits in the mitochondria mostly with that remaining in serum being excreted at 99% in a day or two.

When MeCbl is taken all the nerves "brighten" revealing damage in nerves that had been numb or ignored for years. A person can loose 70% of nerve function before it is noticeable at all. When that damaged 70% starts waking up it does not feel good. On the other hand being aware of it one can be aware of positive changes over a period. A nerve coming back from a demyelination (from my experience) is first number, then big jolts of pain, then constant excruciating pain, then painful tingle, then fading to earlier tingles, cobweb/hairs feelings, warm wetness and other paresthesias then hypersensitive and finally fading to more or less normal sensation or muscle control or bladder control or whatever. And that can happen to hundreds of locations in each foot or leg or whatever. It is quite unpleasant. What did you expect, caviar and Champaign? I think some people do. This is normal healing effects. Things like the low potassium or low folate are induced deficiency symptoms and other things like B1, B2 and B3 can play into that. All of the Deadlock Quartet plays their roles in healing the nerves as well as other things. If everything needed is not present than it breaks partially healed somewhere else with different symtpoms.

Click to expand...

Arx,

Symptoms

I have also experienced patterns of feeling better and worse with things that have worked. A couple of obvious things spring to mind:

if one part of your system wakes fast up before another does, it could cause as much harm as good

you can have too much of a good thing (even if you were deficient)

your instinct to titrate is sensible.

You should not be putting yourself through hell. Always titrate slowly and from the start instead of waiting to crash. Start very low, (halving tablets if needed) and build up in increments spaced at least 2-4 weeks. By doing this you will still have periods of greater fatigue and mild flu like symptoms, but crashing yourself hard with exercise OR therapy is not the best idea, however you do need to accept some mildly unpleasant periods lasting no more than 2-3 weeks. If you crash longer than that, it's not working for you, or you're doing it too aggressively. The only exceptions to this are possibly Ribose and the Aspartates (they can need a loading phase).

Basics

Firstly from personal experience I would strongly suggest you deal with your ETC first the things for that being Ribose, ALC, Creatine, CQ10 and possibly Magnesium-Potassium Aspartate.That puts the base layer of your energy system back (delivering ATP).

Doing the above alone increased my functional levels twofold.

Balanced diet, balanced biochemistry.
The purpose of a balanced diet is to delivery balanced biochemistry. On common sense grounds if you are supplementing pre-processed B-Vitamins you should also be maaintaining balance in those 'energised' B-Vits. Your body energises or 'activates' those B-Vits in two ways: Methylation and Phosphorylation.

Methylation

Next regarding Methylation some people are genetically under-methylated, others are genetically under-methylated. Methylation an do harm to some people. CFS has potential (likelyhood even) if producing various deficiencies (including Methylation).

Your body requires vastly more adb than it does MethylCobalamin and MethylFolate (keep doses of those lower).
Be aware also that not all Folate is Methylated, you also need folinic acid in order to produce that form that makes/repairs DNA.

Phosporylation
It is vital when taking the Methyls that you also take B6 (peferably P5P) and B2 (preferably Riboflavin-5-Phospate).
These work alongside and support the Methyls.

iherb.com has several mixtures of active B-vitamins than have blanced mixes of small amounts, they might be a better 'starter pack for you' and prepare you gently for the stronger stuff.

Also take a LOT of Vitamin C (min 5000mg/day) in order to deal with increases in oxidative damage (short term) and keep your BH4 and Catechol levels good.

I am cured from CFS in 3 months after being sick for more than 2 years using @Freddd 's deadlock quartet protocol. The next challenge for me is to find out why my body needs suh a high ammount of folate (I have figured out that in order to be 100% healthy I need 4.8mg per day which is a high daily dosage if you consider its price and if someones cosiders that I am just 27 years old I can not pay for that for a lifetime so I need to figure out what it is going on.

Symptoms
-Insomnia
-Anxiety
-Panic attacks
-Low energy
-low potassium symptoms (which I found out just recently that it was due to that)
-PEM
-Unsteady walking gait
-Muscle weakness
-Low vision quality at left eye

When i added all 4 supplements of the quarter I was able to fully recover but I knew since the start when i first tried sublingual methylocobalamin that all these would actually make the difference.
co factors needed
-magnesium
-zinc
-potassium
I also want to pay my respects to Freddd that with his experienced guided me through the result that I have now. Without all the suffering that he has been through all these years it would not be possible for me to cure as I am only 27 and I would probably suffer for a lifetime. At least now I know what is going on. I also want to say thanks to phoenixrising for being such a wonderfull place to search for answers and the accumulated knowledge that is being provided here.

I am cured from CFS in 3 months after being sick for more than 2 years using @Freddd 's deadlock quartet protocol. The next challenge for me is to find out why my body needs suh a high ammount of folate (I have figured out that in order to be 100% healthy I need 4.8mg per day which is a high daily dosage if you consider its price and if someones cosiders that I am just 27 years old I can not pay for that for a lifetime so I need to figure out what it is going on.

Symptoms
-Insomnia
-Anxiety
-Panic attacks
-Low energy
-low potassium symptoms (which I found out just recently that it was due to that)
-PEM
-Unsteady walking gait
-Muscle weakness
-Low vision quality at left eye

When i added all 4 supplements of the quarter I was able to fully recover but I knew since the start when i first tried sublingual methylocobalamin that all these would actually make the difference.
co factors needed
-magnesium
-zinc
-potassium
I also want to pay my respects to Freddd that with his experienced guided me through the result that I have now. Without all the suffering that he has been through all these years it would not be possible for me to cure as I am only 27 and I would probably suffer for a lifetime. At least now I know what is going on. I also want to say thanks to phoenixrising for being such a wonderfull place to search for answers and the accumulated knowledge that is being provided here.

Click to expand...

zzz,

I am so pleased to hear of the improvements in your health.

M.E. might be one disease, it's probably many. You may need a unique combination with 'something extra' to produce more permanent improvement.. If you continue to need very high doses of Folates a few obvious things come to mind:

A small amount of Folic Acid (not folinic) or the wrong kind of MethylFolate in the mix can mess up the good MethylFolate, be sure of your brands.

Be sure of your sources. There are useful and useless forms of MethylFolate make sure you are taking pure active ones. A small amount of Folic Acid, or a small amount of the wrong MethylFolate can reduce abortion to 1%.

Genuine L-5-MTHF is only license in max 1000mcg amount for a single supplement, and only in max 800mcg amounts for a mixed supplement.

Rich was in the process of moving to mixed Cobalamins (B12) and mixed Folates (B9) when he sadly passed away and his protocol was op top, of other improvements (anti oxidants etc)..

You could need both Folinic Acid and MethylFolate.

Make sure you are getting enough P5P, B2 (riboflavin), along with the B9 and B12.

If you are taking too much Niacin (B3) that depletes Methyl Groups.

Return to full health (with correct treatment) can take six months plus six months for each full or part five year period. It may take a while without being indefinite.

Have you checked your Genome at 23andMe to see if you have 'built in' problems with your Folate cycle? They might allow Fredd to better target any supplements you need to take long term and reduce cost.

Rich was also looking into BH4 (as am I) and large amounts of Methyl-B9 could indicate the need for BH4. That would mean the need either for BH4 supplementation OR high doses of MethylFolate along with either hydroxocobalamin or very low dose MethylB12 once a day.

If you have this problem then your MethylFolate is wasted if you take much MethylB12 with it, but you must have some B12 in your system.

You can still take the higher dose of MethylB12 at a another time of day (with MethylFolate) if needed.

If this is an issue high doses of Ascorbic Acid (vitamin C) might well be needed (5000mg per day or more).

There are more possibilities, but please post again if none of the above help.